one family's struggle, strength, and hope in the face of acute flaccid myelitis

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Bruce Banner and I have precious little in common. I’m not interested in his solo comics or movies, and he wouldn’t make it onto a list of my favorite Marvel characters. If we’re going by the Marvel Cinematic Universe, OK sure, Mark Ruffalo is adorable and he and I both have brown eyes and brown…

So this is a month-and-a-half late (hi, my name is Andi, and my sh*t is decidedly NOT together), mostly because I’ve spent the past THREE months trying – and failing spectacularly – to authentically articulate my thoughts and emotions. I can’t call August 21, 2017 the first “anniversary” of anything. Nor can I call it…

We found out that the CDC knows virtually nothing about AFM (the first sentence on their “At A Glance” page states CDC is concerned about AFM, a serious illness that we do not know all the cause of or how to prevent.); we have never been more acutely aware of how far medicine still has…

As it was already past 7:00 the evening we were admitted to the hospital, we suspected we’d be staying at least one more night as well. We weren’t exactly wrong – we were admitted Wednesday, August 31, and didn’t leave until Sunday, September 4. From what I’ve read, this is an insanely short stay when…

I’m finding it difficult to get a handle on this post, because it’s a lot of telling, and not a lot of showing. It’s coming out clinical, and not emotional, I think because both Chris and I shut down after the appointment with Dr. L, preparing ourselves for further disappointment the following week. We were…

I know I said we didn’t remember a lot about urgent care or the emergency room – I lied. Unintentionally. Because compared to what we remember (next to nothing) about the ten days between our discharge from the emergency room and our eventual (inevitable?) hospital admittance, our accounts of urgent care and the emergency room were…

Weirdly, this feels like my most vulnerable post yet. Probably because it focuses on my inner workings, and not external awfulness going on around me. Welcome to a piece of my headspace. Sometimes I feel like I just owned the world, and sometimes I feel like the world’s biggest failure. I suspect that’s what it…

Earlier this week, we received a letter of denial for medical assistance. We hit our primary insurance out of pocket maximum at the end of March. In that regard, we’re pretty lucky to have the insurance we have. However, our insurance will only cover 30 sessions of occupational therapy, which Love Bug attends once a…

It’s funny how such a tiny, insignificant, dozen-times-a-day action can become a line of demarcation. The picking up of a phone. The pressing of an on button. Before I pressed it—as far as I knew—my sister Alina was alive. At the moment of pressing, my life split into two distinct epochs: Before the call and…

**Trigger Warning: The subject-matter of this post (sudden paralysis with no explanation forthcoming, and our increasing helplessness) may be disturbing to some.** I can’t honestly say I remember anything at all about Sunday, August 21st, before Love Bug woke up from her nap. Chris doesn’t remember much, either. I don’t know if the morning itself…

At the time of this introduction, we’ve been struggling with the effects of acute flaccid myelitis (AFM) for just over nine months. August 21st, 2016 is a day that my family won’t soon forget. It’s the day that my perfectly healthy, happy, just-three-days-shy-of-two-years-old daughter would go down for a nap, business as usual, and wake…